INTRODUCTION
A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. Cultural practices and spiritual beliefs are the foundations on which many lives are based, and quality care requires medical providers to be both culturally sensitive and culturally competent. This is especially vital during the vulnerable period of end-of-life during childhood (Levetown, Reference Levetown1998; Contro et al., Reference Contro, Davies, Larson and Sourkes2010). Although research has been growing in the palliative care field, the majority of literature on pediatric palliative care focuses on epidemiology, parental decision-making factors, models of care, ethical and legal considerations, symptom management, and ways of providing total care for the family (Gilmer, Reference Gilmer2002; Tomlinson et al., Reference Tomlinson, Capra and Gammon2006; Moody et al., Reference Moody, Siegel and Scharbach2011). Children with life-limiting and life-threatening illnesses that lead to death deserve a cultural reappraisal of how we care for them when the aim of care has shifted from curative to simply offering the best possible “health” and “quality of life” (Benini et al., Reference Benini, Spizzichino and Trapanotto2008).
Beginning with brief overviews of cultural competence and pediatric palliative care, this article reviews the relevant literature, describes the influence that culture and religion can have on end-of-life pediatric care, and highlights the importance of integrating culture with death and dying traditions. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. These include the following areas of improving pediatric palliative care: maximize family involvement, involve children in decision making, minimize pain, provide emotional and spiritual support to families, facilitate access to needs, enhance continuity of care, and offer bereavement support (Solomon et al., Reference Solomon, Dokken and Fleischman2002).
Cultural Competence
The concept of cultural competence and its necessity in treatment of diverse patients and families has flourished within the last decade. Research shows that cultural competence is more than accumulated knowledge of cultural practices; it encompasses a need for medical practitioners to consider their own constructs of bias and belief (Surbone, Reference Surbone2008; Kumagai & Lypson, Reference Kumagai and Lypson2009). Cultural competence must be considered in context of the diverse personal, medical and practitioner cultures that abound in clinical settings (Taylor, Reference Taylor2003). Moreover, cultural practices cannot be taken out of patient context. It is easy to oversimplify cultural or religious practices. Social factors, such as class and literacy, differentiate individuals within cultural norms (Taylor, Reference Taylor2003). Likewise, practitioners must be aware of the contrary effect of perpetuating rigid stereotypes about what members of a particular ‘‘culture’’ believe, do, or want, and how that translates to provision of care. The modern view of cultural competence emphasizes its fluidity: a process that bridges care and patient need as a vital link in communication with patients and families during tragic circumstances.
Pediatric Palliative Care
Palliative care is aimed at improving the quality of life for patients and their families who are confronted with life-threatening illness by providing support and care for pain, physical symptoms, psychological and social stress, and spirituality. Pediatric palliative care encompasses the same goals as adult palliative care, but focuses specifically on serving the unique needs of the child and family (Anghelescu et al., Reference Anghelescu, Oakes and Hinds2006). During youth, life-threatening illness is shaped by the child's developmental context, which includes not only physical transitions but also psychological, emotional, and spiritual changes. For example, pediatric palliative care in the neonatal unit is fundamentally different from the pediatric palliative care appropriate with an adolescent, whose complexity of thought allows greater reflection regarding his or her beliefs and wishes about death (Himelstein et al., Reference Himelstein, Hilden and Boldt2004). A particular challenge specific to pediatric palliative services is that end-of-life care for a child seems inherently unnatural in the mind of many parents and doctors, who often struggle to accept that nothing more can be done for a child. It is not unheard of for children with leukemia to receive “a third or fourth bone marrow transplantation in an attempt to induce a short-term remission or to maintain some quality of life, but with no hope of cure” (Himelstein et al., Reference Himelstein, Hilden and Boldt2004, p. 1758), something typically outside the standard of medical care for an adult patient. Discrepancies in treatment goals between staff and family and lack of understanding of the concept of palliative care can also delay the introduction of pediatric palliative care services, and may prolong physical pain in children, as well as emotional and psychological suffering in their parents and treatment team (Koenig & Davies, Reference Koenig, Davies, Field and Behrman2002; Anghelescu et al., Reference Anghelescu, Oakes and Hinds2006; Mack & Wolfe, Reference Mack and Wolfe2006; Davies et al., Reference Davies, Sehring and Partridge2008).
Dealing with the potential loss of one's child is a catastrophic experience across cultures (De Trill & Kovalcik, Reference DeTrill and Kovalcik1997); however, the literature suggests that cultural influences may further complicate the appropriate integration of pediatric palliative care. A study conducted by Davies et al. (Reference Davies, Sehring and Partridge2008) found that nearly 40% of healthcare providers identified cultural differences as a frequently occurring barrier to adequate pediatric palliative care. For example, Latino parents tend to have an overarching belief that every effort should be made to save the child, a notion found to make parents hesitate to institute palliative care, regardless of illness severity (Thibodeaux & Deatrick, Reference Thibodeaux and Deatrick2007). Sandoval (Reference Sandoval, O'Neill, Selwyn and Schietinger2003) found that African-American individuals with strong ties to Christianity might be hesitant to discontinue life-prolonging treatments because of a belief in divine rescue (Sandoval, Reference Sandoval, O'Neill, Selwyn and Schietinger2003). In such circumstances, by accepting palliative care, parents may feel that their child is not being provided with the best possible care. Moreover, such interpretation can lead to a preference for life-prolonging treatments over interventions designed to reduce suffering and to provide comfort and support.
The underutilization of palliative care services among ethnic minorities, specifically Latino, Indian, Native and African-Americans, has been well described and often attributed to factors such as lack of the family's familiarity with hospice and palliative care services, language barriers, religious differences, difficulties in accessing insurance, distrust of the healthcare services, discomfort with introducing additional healthcare with professionals not of one's ethnic or cultural background into the home, physicians' discomfort, or a combination of factors (Greiner et al., Reference Greiner, Perera and Ahluwalia2003; Lyke & Colon, Reference Lyke and Colon2004; Hardy et al., Reference Hardy, Chan and Liu2011). However, there is a clear dearth of literature addressing cultural considerations in the pediatric palliative care field. Moreover, members of a specific culture often do not ascribe to the same religious traditions. This article sought to explore and address the influence of religion in pediatric palliative care, with emphasis on how culture informs lifestyle and shapes the universal experiences of illness, pain, and death.
SEARCH METHODS
Literature reviewed for this article was identified through an online search of nine databases (PsychINFO®, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO,and Ovid) for articles published between 1980 and 2011. Key terms: culture, transcultural, spiritual, international, ethnic, custom or religion and end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology were combined. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and those relevant articles were also included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Studies were excluded if they focused on adjustment of children with serious illness rather than on cultural issues, or were not published in English.
Considering the limited number of published reports in the area of culture and pediatric palliative care, both qualitative and quantitative studies were included. Reference lists from retrieved articles and review articles were also searched for relevant studies. Two psychology students, a master's level social worker, and a scientific librarian conducted the search. Two separate reviewers with pediatric psychosocial oncology experience examined the full-text articles against the predetermined inclusion/exclusion criteria. Many other studies and resources provided important insights into cultural and religious beliefs that have applicability in end-of-life care, and are included in the references. Tables were constructed using categories such as demographic and cultural characteristics, followed by the creation of codes in order to perform a thematic analysis of the findings of each article. Once codes were independently grouped together in broad themes, consensus was obtained between the author (L.W.) and reviewers.
RESULTS
Out of 93 articles identified through the literature searches, 37 met inclusion criteria: Crom, Reference Crom1995; De Trill & Kovalcik, Reference DeTrill and Kovalcik1997; Flores et al., Reference Flores, Abreu and Olivar1998, Reference Flores, Abreu and Schwartz2000; Levetown, Reference Levetown1998; Cantro et al., Reference Contro, Larson and Scofield2002; Crawley et al., Reference Crawley, Marshall and Lo2002; Koenig & Davies, Reference Koenig, Davies, Field and Behrman2002; Solomon et al., Reference Solomon, Dokken and Fleischman2002; Field & Behrman, Reference Field and Behrman2003; Mazanec & Tyler, Reference Mazanec and Tyler2003; Himelstein et al., Reference Himelstein, Hilden and Boldt2004; Kato et al., Reference Kato, Yano and Ito2004; Munet-Vilaro, Reference Munet-Vilaro2004; Owens & Randhawa, Reference Owens and Randhawa2004; Kemp, Reference Kemp2005; Abbe et al., Reference Abbe, Simon and Angiolillo2006; Anghelescu et al., Reference Anghelescu, Oakes and Hinds2006; Campbell, Reference Campbell2006; Lobar et al., Reference Lobar, Youngblut and Brooten2006; Mack et al., Reference Mack and Wolfe2006; Meyer et al., Reference Meyer, Ritholz and Burns2006; Tomlinson et al., Reference Tomlinson, Capra and Gammon2006; Kobler et al., Reference Kobler, Limbo and Kavanaugh2007; Thibodeaux et al., Reference Thibodeaux and Deatrick2007; Benini et al., Reference Benini, Spizzichino and Trapanotto2008; Davies et al., Reference Davies, Sehring and Partridge2008; Jacob et al., Reference Jacob, McCarthy and Sambuco2008; Kongnetiman et al., Reference Kongnetiman, Lai and Berg2008; Surbone, Reference Surbone2008; Dell, Reference Dell, Wiener, Pao and Kazak2009; Cantro et al., Reference Contro, Davies, Larson and Sourkes2010; Gupta et al., Reference Gupta, Willert and Pian2010; Hatano et al., Reference Hatano, Yamada and Fukui2011; Moody et al., Reference Moody, Siegel and Scharbach2011). From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.
The Role of Culture in Decision Making
Appreciation of cultural norms and customs is critical as it pertains to family decision makers and those who learn about the diagnosis or prognosis. For many cultures, family can be defined as not only immediate family members but also extended family and community members. For example, Olsen et al. (Reference Olsen, Taualii and Eteni2007) report that Native American individuals may want information shared with community leaders so that they can help in decision making for the child. Mazanec and Tyler (Reference Mazanec and Tyler2003) found that many African-American families prefer that conversations be initiated with the eldest member of the family, typically the male. Similar traditions of respecting the opinions of elders exist in Russian culture (Lipson et al., Reference Lipson, Dibble and Minarik1997; Matthews et al., Reference Matthews, Del Priore and Acitelli2006). Other studies found that Latino and Asian families when assessing the spiritual care needs of Latino and Asian families, other studies found that the family may stipulate that information be conveyed without the child present (Mazanec & Tyler, Reference Mazanec and Tyler2003; Brolley et al., Reference Brolley, Tu and Wong2007; Cardenas et al., Reference Cardenas, Garces and Johnson2007).
Child-rearing practices in different cultures may also play a role in decision making. Some cultures emphasize autonomy and independence, whereas others encourage boundary melding. For example, Japanese child rearing practices seem to blur boundaries between mother and child (Seiko, Reference Seiko1989; De Trill & Kovalcik, Reference DeTrill and Kovalcik1997). Other cultures emphasize living in harmony with one's environment rather than attempting to control it, which may lead to a more passive approach to illness and decision making. Illness may also have a different meaning depending upon which member of the family is ill. This is more prevalent for some traditional cultures that seem to present a strong desire to have male children to sustain the family line (Namboze, Reference Namboze1983).
Gender often plays a role in decision making. In both Asian and Latino families, the mother is typically regarded as the primary caregiver; therefore, decisions will often be placed in her hands (Himelstein et al., Reference Himelstein, Hilden and Boldt2004; Phan & Tran, Reference Phan and Tran2007). However, when possible, Latino women will seek the permission of the child's father before deciding to seek, continue, or discontinue treatment. This is a reflection of familismo, a term used to describe the power and strength of the family in Latino culture. Familismo is characterized by interdependence, affiliation, and cooperation (Cardenas et al., Reference Cardenas, Garces and Johnson2007). However, these traditional role assumptions are challenged when language becomes a barrier. The normative hierarchical family structure is often waived based on the individual who speaks the best English, which often leads to a child or adolescent becoming the family spokesperson (Campbell, Reference Campbell2006). When the ill child is placed in a role of authority as translator of medical information for parents, conflict can ensue when treatment decisions need to be made (DeTrill & Kovalcik, Reference DeTrill and Kovalcik1997).
Faith and the Involvement of Clergy
Parents of children receiving palliative care have noted that faith is central to their efforts to provide guidance, make sense of their situation, grant permission around end-of-life decision making, and to better cope (Meyer et al., Reference Meyer, Ritholz and Burns2006). Table 1 provides an overview of major faith traditions, beliefs, and practices at the end of life. Most families who are religious have certain customs around end-of-life care that they would like to have respected. Catholic Latino families will likely want a priest at the child's bedside to complete death rituals (e.g., reading of last rites) (Lee et al., Reference Lee, Phan and Tran2007). Buddhists may wish to have a monk chant. However, the intention of this Table is not to be an algorithm, but rather a guide families of diverse faiths.
Table 1. Major faith traditions, beliefs and practices regarding illness, dying and death a
a These are general, historical beliefs and practices according to some world religions. Always inquire with your patient and family about their individual preferences.
bKongnetiman et al., Reference Kongnetiman, Lai and Berg2008.
cJohnson & McGee, Reference Johnson and McGee1998; Puchalski et al., Reference Puchalski, Dorff and Hendi2004.
dFlood, Reference Flood2003; Kongnetiman et al., Reference Kongnetiman, Lai and Berg2008; Thrane, 2008.
eJohnson & McGee, Reference Johnson and McGee1998; Kongnetiman et al., Reference Kongnetiman, Lai and Berg2008.
fChambers, 2009; Watch Tower Bible and Tract Society of Pennsylvania, 2012.
gLamm, 1967; Dubov, Reference Dubov1995; Johnson & McGee, Reference Johnson and McGee1998; Puchalski et al., Reference Puchalski, Dorff and Hendi2004.
hJohnson & McGee, Reference Johnson and McGee1998.
iJohnson & McGee, Reference Johnson and McGee1998; Puchalski et al., Reference Puchalski, Dorff and Hendi2004.
jGeneral Conference of Seventh-Day Adventists, 1992.
Whereas a guide for families of diverse faiths and religious traditions are important across cultures, the involvement of pastoral workers in pediatric palliative care is not universal. For example, Vietnamese families visited by the hospital chaplain often interpret this as a symbol of the child's impending death (Phan & Tran, Reference Phan and Tran2007). Latino families may not want mental health workers involved in the grief process because they believe it signifies their grief as pathological (Cardenas et al., Reference Cardenas, Garces and Johnson2007). Overall knowledge of cultural differences is important, but it is vital that healthcare practitioners understand that such practices differ among people from the same heritage. For example, whereas most Vietnamese are Buddhist, they may have other religious affiliations such as Catholic, Evangelical Protestant, and Chinese Confucianism, and each religion may have a different practice. Asking family members about their preferences and rituals will help providers understand their particular needs and desires and reduce the likelihood of stereotyping.
Communication: Spoken and Unspoken Language
Communication is a means by which people connect (Andrews, Reference Andrews and Boyle2003), and verbal communication entails language, which can be a critical barrier in facilitating meaningful and deep communications that are foundational to pediatric palliative care (Kemp, Reference Kemp2005). Breakdowns in communication can lead to improper diagnosis, inadequate pain management, underutilization of prescription medications, and difficulty in obtaining informed consent between Latino patients and their medical providers (Crom, Reference Crom1995; Flores & Vega, Reference Flores and Vega1998; Flores, et al., Reference Flores, Abreu and Olivar1998, Reference Flores, Abreu and Schwartz2000) as well as in other cultures. Families can experience additional despair when language barriers result in an inability to acquire complete information about their child's health status or a physician's recommended interventions (Contro et al., Reference Contro, Larson and Scofield2002). This emphasizes the need for trained medical interpreters to be used to mediate communication between family and healthcare professionals (Field & Behrman, Reference Field and Behrman2003; Randhawa et al., Reference Randhawa, Owens and Alastair2003). The choice of words, too, can create barriers to successful communication. For example, Native American, Filipino, Chinese, and Bosnian cultures emphasize that once words are spoken out loud, they may become a reality (Searight & Gafford, Reference Searight and Gafford2005). Therefore, reluctance for parents to talk about end-of-life care may be based on the belief that acknowledgement of their child's impending mortality may be self fulfilling (Liu et al., Reference Liu, Lin and Chen1999). In addition to the spoken word, other nonverbal cultural variations may impede accurate communication. Nodding the head in many Asian and Latino communities simply indicates listening, not agreement to what a healthcare professional is saying (Phan & Tran, Reference Phan and Tran2007). Direct eye contact may be interpreted as aggressive or hostile in the Chinese and African American communities (Campbell, Reference Campbell2006). In Latino communities, direct eye contact can be viewed as a means of transferring illness via mal ojo, or evil eye (Lipson et al., Reference Lipson, Dibble and Minarik1997). A similar view is prevalent in both Native American and Vietnamese communities (Olsen et al., Reference Olsen, Taualii and Eteni2007; Phan & Tran, Reference Phan and Tran2007).
In the United States, communicating difficult information is often accompanied by gestures such as touching the arm or hand, which are often used to convey warmth, empathy, or reassurance. However, gestures can be interpreted differently by other cultures and are imbued with great cultural significance and meaning. Some cultures are more tactile than others (Giger & Davidhizar, Reference Giger and Davidhizar2004). Touching a child's head, a common means of showing affection in European-American culture, can be viewed as disrespectful. For example, Native Americans have many traditions around the head and the hair, and prefer that no one touch their head unless absolutely necessary. Native Americans also prefer to have medical examinations conducted from the feet up rather than from the head down to demonstrate that the most important part of the body is attended to last (Olsen et al., Reference Olsen, Taualii and Eteni2007). More recent Vietnamese immigrants may have concerns about touching the patient's head (Phan & Tran, Reference Phan and Tran2007). If this is an area of concern, head touching or patting as means of building rapport should not be used with the child. Religious doctrine, too, must be respected. In the Orthodox Jewish traditions, touching a parent of the opposite sex, even if the intent is to show compassion, is prohibited. Similar views may be shared by individuals of Islamic faith (Campbell, Reference Campbell2006).
Communication with Children about Death: Truth Telling
Communication with patients and families in palliative care is influenced by many factors beyond the child's age, especially regarding the cultural dimensions of truth telling (Hatano et al., Reference Hatano, Yamada and Fukui2011). If a parent opposes disclosure of a terminal illness (especially when the child is an adolescent), conflict between the healthcare team and family can occur, even when cultural norms are followed. Western psychosocial care recommends that parents should be committed to truthfulness beginning at the child's initial diagnosis and encourages open, age-appropriate communication with children (Matthews et al., Reference Matthews, Del Priore and Acitelli2006). Reluctance to discuss death can represent parents' own pain and inability to accept the certainty of their child's end of life. Families may decide not to discuss death even if their child may anticipate not surviving the illness, and nondisclosure can interfere with preparation for dying (Davies et al., Reference Davies, Sehring and Partridge2008).
There are many cultures where nondisclosure of life-threatening diagnoses to a child is acceptable (Elwynet al., Reference Elwyn, Fetters and Gorenflo1998). Chinese, Korean, and Russian-American families often choose not to convey a death diagnosis to the child for fear that this will damage his or her hope, causing a poorer prognosis (Brolley et al., Reference Brolley, Tu and Wong2007; University of Washington Medical Center, 2007; Song & Ahn, Reference Song and Ahn2007). Parental decisions about whether to inform a child about impending death may also depend upon whether they believe the emotional burden associated with this knowledge may be harmful to their child or may expedite the child's death (Woo, Reference Woo1999; Payne & Chapman, Reference Payne, Chapman and Holloway2005; Gupta et al., Reference Gupta, Willert and Pian2010).
Lack of communication can lead to emotional distance at a time when closeness is most needed. If the family is comfortable with their child participating in his or her end-of-life care, documents that address advance care planning may be useful to initiate such conversations (Wiener et al., Reference Wiener, Ballard and Brennan2008). Most hospice programs require an advance directive (AD) prior to services being provided. However, research shows that non-white adults, particularly Asians, Hispanics, African-Americans, and Mexican-Americans, have lower rates of completing written ADs than other ethnic groups. Factors that elucidate this claim include distrust of the healthcare system, varying cultural perspectives on death and suffering, the role of family dynamics (Baker, Reference Baker2002; Perkins et al., Reference Perkins, Geppert and Gonzales2002; Searight & Gafford, Reference Searight and Gafford2005), an aversion to signing legally binding documents (Kitzes & Berger, Reference Kitzes and Berger2004), or a view that discussions about advance directives is disrespectful and can bring bad luck (Orona et al., Reference Orona, Koenig and Davis1994). No research was found that examined cross-cultural similarities and differences pertaining to parental attitudes toward advance care planning for one's child. Parents, however, often have strong wishes about their child's end-of-life care but may express them at different times to different people — or not at all. Diligently learning about the child's and family's wishes, some of which may be rooted in ethnic culture, is paramount to avoiding communication pitfalls (Perkins, et al., Reference Perkins, Geppert and Gonzales2002). For example, appointing a specific family member to be in charge of end-of-life decision making may lead to extended family conflict for many Latinos, who find a consensually oriented decision-making approach more acceptable (Morrison et al., Reference Morrison, Zayas and Mulvihill1998). Alternatively, presenting issues in hypothetical terms to determine level of comfort (Srivastava, Reference Srivastava2007) may be less threatening to those who find direct conversations about death disrespectful or unacceptable.
Meaning of Pain and Suffering
Regardless of whether a family chooses to discuss impending death with their child, the management of their child's pain and suffering is a critical issue for all parents. In a landmark study designed to gain greater understanding and insight into the symptoms experienced by children at the end of life, Wolfe et al. (Reference Wolfe, Klar and Holcombe2000) found that 89% of parents believed their children suffered “a lot” or “a great deal” from at least one symptom in the last month of life. In other studies, inadequate assessment of pain was found to be a barrier to effective pain treatment in children from diverse ethnic backgrounds (Flores & Vega, Reference Flores and Vega1998; Abbe et al., Reference Abbe, Simon and Angiolillo2006; Ljungman et al., Reference Ljungman, Kreuger and Gordh2006; Jacob et al., Reference Jacob, McCarthy and Sambuco2008). Specifically, language and cultural barriers make pain assessment and treatment particularly challenging for clinicians. Anderson and colleagues (Reference Anderson, Mendoza and Valero2000) discovered minorities in the United States to be at greater risk for unmanaged pain because of a lack of medical insurance, poor access to appropriate preventive care, delay in reporting symptoms, cultural beliefs, distrust of medicine, and other factors associated with physician judgment. It is possible that these barriers exist for families considering pediatric palliative care and pain management.
The perception and experience of physical pain and the meaning pain has to one's existence varies by culture (Davidhizar & Bartlett, Reference Davidhizar and Bartlett2000). In the Chinese culture, pain has been understood as a result of blocked Qi. To resolve the pain, the blockage must be removed and the patient must return to a state of harmony with the universe (Chen et al., Reference Chen, Miaskowski and Dodd2008). Latino individuals have been noted to interpret pain and suffering as a form of punishment from a spiritual power — with the sick individual needing to endure pain to be granted entrance to heaven (Davidhizar & Giger, Reference Davidhizar and Giger2004) and as a test of their personal fortitude (Munet-Vilaro, Reference Munet-Vilaro2004). Other countries such as India, Bangladesh, Nepal, Pakistan, and others in South Asia were found to share similar views of reincarnation pain (Matthews et al., Reference Matthews, Del Priore and Acitelli2006). For the reasons mentioned, individuals from these cultures may be more likely to under report pain or feel they have to endure it. Whether these findings hold true for children as well as adults is not known.
Culture can also influence the request for medications or treatments to assist in ameliorating pain (Post et al., Reference Post, Blustein and Gordon1996). Chinese, Korean, Vietnamese, and Native Americans have been reported to view asking for assistance with pain as a sign of disrespect (Burhansstipanov & Hollow, Reference Burhansstipanov and Hollow2001; Gunnarsdottir et al., Reference Gunnarsdottir, Donovan and Serlin2002). Campbell (Reference Campbell2006) found that Vietnamese individuals often find it rude to say no to a doctor, therefore increasing the likelihood that they will not contradict doctor's orders if the amount of pain medication is insufficient. Within this cultural frame of mind, medical professionals are viewed as experts in their respective areas and are not to be corrected. If the patient explained that more medication might be necessary, the pain could be more adequately controlled (Dell, Reference Dell, Wiener, Pao and Kazak2009). Alternatively, cultures that value self-control and stoicism in the face of pain further decrease the likelihood of voicing complaints of unmanaged pain (Brolley et al., Reference Brolley, Tu and Wong2007). Research conducted on pain perception in Native Americans found that this population will often not report pain, or will do so through metaphors or storytelling, making pain management challenging. For example, one Native American patient told a long, detailed story about the pain of one of his tribesman, when the pain was actually his own (Olsen et al., Reference Olsen, Taualii and Eteni2007). Children raised within these cultural norms may adopt similar styles to describe or attribute their pain or the need for pain management.
Choice of treatment at the end of life may also reflect cultural differences that are incongruous or supplemental with the medical treatment provided in the hospital or as recommended by hospice providers. Latino individuals with indigenous roots may engage in healing rituals that seek to remove evil spirits from the body of the sick individual (Mazanec & Tyler, Reference Mazanec and Tyler2003). Some practices commonly described in the literature include the use of amulets, herbs, or natural remedies. Chinese Americans may incorporate special cloths or amulets into treatment and may give the sick individual special foods in an attempt to restore balance in metaphysical energies (Mazanec & Tyler, Reference Mazanec and Tyler2003). Asian, Native American, and Latino individuals may choose to augment Western medical treatments with specific herbs deemed beneficial for their child, such as ginseng, an herb often used by Korean families (Brolley et al., Reference Brolley, Tu and Wong2007; Song & Ahn, Reference Song and Ahn2007). Vietnamese families may use a practice known as cao gio (coin rubbing) or bat gio (skin pinching) as a means of removing noxious elements from the body (Campbell, Reference Campbell2006). Native Americans might seek treatment in a sweat lodge prior to and in conjunction with hospital-based treatment as a means of purifying the body of toxins introduced by European-Americans. This act is thought to repair physical and spiritual damage to an individual. Alternative medicine, such as massage, acupuncture, or moxibuxtionFootnote 1 might also be viewed as frontline treatments across cultures (Campbell, Reference Campbell2006). Moreover, many ethnic minorities in the United States will often seek medical help from traditional healers before using standard medical hospitals or outpatient settings (Cardenas et al., Reference Cardenas, Garces and Johnson2007). Different customs and traditions related to cause of illness and proper treatment can significantly impact the degree to which families will seek out and follow through with treatment. Research is lacking but it has been suggested that less acculturated families may also have less access to health insurance (Flores & Vega, Reference Flores and Vega1998). Consequently, it is possible that minority children might initially present with greater severity of disease than individuals who are more acculturated to United States society.
Meaning of Illness, Dying and Death
A common existential or spiritual issue often grappled with by children and young adults living with a life-threatening illness is the search for the meaning of pain, illness, suffering, and death. This meaning is not static across cultures. Native American children and families, for example, typically have a holistic view of both health and sickness (Olsen et al., Reference Olsen, Taualii and Eteni2007). Believing in a delicate balance between nature, spirituality, people, and the greater community, any balance disruption can lead to illness and/or death (Olsen et al., Reference Olsen, Taualii and Eteni2007). In Chinese, Korean, and Vietnamese cultures, illness and death are viewed as a natural part of life (Brolley et al., Reference Brolley, Tu and Wong2007; Phan & Tran, Reference Phan and Tran2007; Song & Ahn, Reference Song and Ahn2007), and illness may occur when there is an imbalance in competing energies within the body (Matthews et al., Reference Matthews, Del Priore and Acitelli2006). These energies include, but are not limited to, hot and cold and light and dark (Brolley et al., Reference Brolley, Tu and Wong2007).
Vietnamese families describe illness as a conflict between the body and nature (Phan & Tran, Reference Phan and Tran2007). Many Asian individuals of Buddhist, Confucian, or Hindu faiths may attribute illness and suffering to bad karma (Brolley et al., Reference Brolley, Tu and Wong2007) and view suffering as a mechanism for atoning for sins committed in a former life. Avoidance of suffering will only transfer pain to the next life (Mazanec & Tyler, Reference Mazanec and Tyler2003). South Asian communities also often attribute illness and suffering to sins committed in a previous life (Matthews et al., Reference Matthews, Del Priore and Acitelli2006). For this reason, individuals within these communities who are critically ill may be stigmatized rather than treated empathetically; they are seen as deserving the affliction from which they are suffering (Chaturvedi, Reference Chaturvedi2008). Muslims believe that illness can result from bad actions, in this or past lives, and that illness washes away a person's sins (Minarik, Reference Minarik1996). Korean and Russian individuals sometimes view illness as arising from interfamilial or peer conflict (Brolley et al., Reference Brolley, Tu and Wong2007; Song & Ahn, Reference Song and Ahn2007). Latino families will often interpret death as something both natural and uncontrollable, and believe that one's fate is often left in the hands of God (Cardenas et al., Reference Cardenas, Garces and Johnson2007). Actions taken at the end of life may be associated with later bereavement reactions. For example, people in the Chinese culture who believe a “bad death” is a curse may be overwhelmed with guilt if they have been unable to facilitate what they believe to be a “good death” for their child (Xu, Reference Xu2007).
Himelstein et al. (Reference Himelstein, Hilden and Boldt2004) recommends conducting spiritual assessments with the child and family as an essential element of pediatric palliative care. This includes assessing the child's hopes, dreams, and values as reported by the child, beliefs about the meaning of life and death, and opinion on the role of prayer and ritual in times of illness. In addition, conversations around past experiences with death or other traumatic events are often useful in determining the child's view of what occurs to someone following both physical and metaphysical death (Himelstein et al., Reference Himelstein, Hilden and Boldt2004). Gently probing spiritual values surrounding pain and suffering can also facilitate appropriate spiritual care for a child and family. If, for example, one learns that the child is experiencing spiritual distress because his or her pain cannot be overcome with meditation, then counseling from a spiritual advisor might improve quality of care and communication (Whitman, Reference Whitman2007; Thrane, Reference Thrane2010). Family members may benefit from being asked if there are times that they would like a minister or other spiritual leader present as such support can reduce distress and suffering throughout the trajectory of the child's illness and death (Braun & Nichols, Reference Braun and Nichols1997).
Location of End-of-Life Care
The meaning and purpose sought in both life and death, including rituals and customs, might be linked to a specific desired setting for end-of-life care. Religious practices post-death are broadly addressed in Table 1. Limited literature is available on cultural differences pertaining to whether one's final days are best spent at home or in a medical facility. Some Chinese individuals believe that death in the home is a sign of bad luck, whereas other Chinese individuals fear that if an individual dies while in the hospital, his or her soul will be lost (Mazanec & Tyler, Reference Mazanec and Tyler2003). Both Latino and Filipino families may prefer that the child die at home. Many Filipino families prefer that every family member possible say a personal goodbye to the child, which calls for sensitivity by hospice or hospital workers and may impact on home-based or hospital-based palliative care (Mazanec & Tyler, Reference Mazanec and Tyler2003). Moreover, if any stigma exists around the child's illness, families might ask that hospice workers be discreet in arrival and departure from the home so as not to draw attention to the family (Chaturvedi, Reference Chaturvedi2008).
Indian families may prefer that end-of-life care focus on symptom management and control of the child's pain. They may not see a need to involve the palliative care team in addressing the spiritual or holistic needs of the child (Owens & Randhawa, Reference Owens and Randhawa2004). Many Indian families will also designate certain rooms in their home for specific activities, which may impact home care. Healthcare professionals will be expected to spend their time not in the child's sick room but rather in a room designated for greeting and hosting guests.
When death occurs, cultural differences in expressions of grief may be observed. In Latino culture, the grief process may be displayed very publicly. Family members often wail at the bedside of the sick individual, both before and after death (Cardenas et al., Reference Cardenas, Garces and Johnson2007). Such conduct is not permitted in Islam, which holds that believers are to face bereavement like all the other trials of life, with patience, and wailing could indicate discontent with Islam (al-Jawziyyah, Reference al-Jawziyyah and al-Khattab1997). Beliefs and traditions may also mandate how the body should be cleaned, prepared, and cared for following a child's death. Such traditions may also include who touches the body last, whether someone needs to stay with the body until burial, and rituals of giving forgiveness for any harm or discomfort caused during his/her lifetime. Families may have strong feelings about issues such as autopsy and organ donation. It is critically important that each family be asked about their own traditions and beliefs so that whenever possible, arrangements can be made to respectfully accommodate families (Kobler et al., Reference Kobler, Limbo and Kavanaugh2007).
CLINICAL IMPLICATIONS AND FUTURE DIRECTIONS
Models of pediatric palliative care call for a family-centered approach and early integration of palliative care to enhance the quality of life for the child and family members (Wolfe et al., Reference Wolfe, Klar and Holcombe2000). A family-centered approach is also appropriate cross-culturally, as it aligns with collectivist traditions and is sensitive to structural differences in family roles and values. As the patient population in the United States becomes increasingly multicultural, a nascent body of evidence supports cross-cultural training, the use of cross-cultural principles, and the appreciation of the needs of immigrant patients and families. The Institute of Medicine has published two reports underlining the necessity for cross-cultural training (Institute of Medicine, 2001, 2011). In 2002, the Initiative for Pediatric Palliative Care (IPPC) undertook a quality improvement project designed to help improve both access to and utilization of pediatric palliative care. The IPPC group specifically highlighted the exigency of providing care that is culturally sensitive, but specific directives on how to accomplish this were not provided. Table 2 provides information on how to provide culturally sensitive care within the pediatric palliative setting by synthesizing IPPC's framework. Considerations for tailoring these suggestions to align with best practices for cultural competency and sensitivity within different ethnic populations are reviewed in Table 3.
Table 2. Synthesizing IPPC's framework to provide culturally sensitive pediatric palliative care
IPPC, Initiative for Pediatric Palliative Care.
Table 3. Ethnicity and cultural considerations at end of life
There are now a plethora of online resources to assist in implementing cultural competence (see University of Washington Medical Center's Culture Clues®; Ethnomed; Health Resources Service Administration (HRSA) Cultural Competence Resources for Health Care Providers). The trouble now is not availability of resources, but creating a balance of cultural education with individual conversations. Concepts of culture should not be used to predict individual behavior, as this can lead to stereotyping (Crawley et al., Reference Crawley, Marshall and Lo2002). Future research regarding culturally based preferences in pediatric palliative care will help physicians improve working models of palliative care to ensure the best quality of life and end-of-life care for the child and family faced with a life-threatening illness.
Study Limitations and Future Research Directions
Several limitations to this review of cultural considerations in pediatric palliative care are important to note. The influx of immigrants into the United States makes it impossible to document all cross-cultural differences, especially as ethnic communities represent many different national origins, cultures, languages, and traditions. Therefore, research lags behind real time. Most current literature addresses cultural differences from an informative angle, providing a survey of practices and beliefs unique to ethnic groups. Group and individual viewpoints within cultural differences are not well explored. Some areas of needed study include practitioner bias, results of cross-cultural training, and healthcare system handling of cultural practices that may bump into Western ways of medical services delivery. Also, future studies should address a systems perspective in cultural differences, training, practitioner accommodation, and patient and family responses pertaining to a child's death in particular. Additionally, few empirically based studies concerning cultural variances within pediatric palliative care have been published, and most of these concern adult cohorts. The pediatric data available are primarily descriptive or based on parent report. Finally, the studies identified through this search were limited by great variability in terms of sample size, study setting, patient demographics, and measurements used. These weaknesses in the literature limit conclusions and extrapolation. It is hoped that the current review will inspire both new and seasoned researchers to investigate best practices in diverse nations to promote excellent care for children at the end of life. The authors hoped to learn about the appropriateness for members of a healthcare team to attend funerals in different faith and cultural communities. Such information was not found in this search. This would be another important area of exploration in future studies.
CONCLUSIONS
A number of potential barriers to Western ideas of appropriate pediatric palliative care emerged from the literature. These cultural barriers may not be manifested overtly by patients or their families, but can result in the misinterpretation of medical information (De Trill & Kovalcik, Reference DeTrill and Kovalcik1997) and care options at the end of life. Palliative care commands knowledge and respect of individual value systems, beliefs, family structure, religion, ethnic roots, and cultural norms, as well as group cultural practices. Understanding ethnic variations is only a start, not an end, to the needed exploration (Perkins et al., Reference Perkins, Geppert and Gonzales2002). Beliefs and practices vary along the spectrum of education and Western acculturation. Moreover, families may not be able to perform traditional rituals or customs within Western cultures, and feel they must conform to practices that differ greatly from their own fundamental beliefs, values, and practices (Laungani, Reference Laungani1996). At the end of a child's life, the focus needs to be on quality as defined by the family, not the provider. Supporting parents so that they can fulfill their traditional role as caregivers, protectors, decision makers, providers of love and physical tenderness, and instillers of faith (Meyer et al., Reference Meyer, Ritholz and Burns2006) requires an individualized approach to end-of-life care. Respecting beliefs, customs, and traditions with a focus on preserving the integrity and sanctity of the parent–child relationship is of utmost importance in pediatric palliative care.
ACKNOWLEDGMENTS
We gratefully acknowledge Laurie Steffen and Brie Kohrt for their early literature searches and preliminary review of the literature. We are also most appreciative of the time and effort given to this article by Nia Billing, who helped format the references for the manuscript, and Haven Battles for her critical review of the manuscript. This research was supported by the Center for Cancer Research, National Cancer Institute and the National Institute of Mental Health. The opinions expressed in the article are the views of the authors and do not necessarily reflect the views of the Department of Health and Human Services or the United States government.
